J a k e

J a k e
at the beach in Destin

Jake's story

July 21st was a normal day, as were the days of summer before. Everything was in it's place. School days were approaching and the family was enjoying the last days by the pool, ignored bedtimes and high popsicle counts.

Then July 22, 2008 came....

Jake had his first seizure. I did not recognize it as such. It was not until he had several more of these "little jerks" and bloody noses that I thought this could be seizure activity. We were scheduled to see a neurologist on August 4th, after going through our pediatrician, however we didn't make it that far. I was awakened August 1st, by Jake in a full seizure (6 minutes long)...he started to turn blue so I called 911....

Here begins our journey......

...we were taken by ambulance to the hospital. Checked in. Released. 3 more grand mal seizures after being released. Checked back in. Sent home 3 days later. Another grand mal, this one lasting a whopping 11 minutes and taken by ambulance again. Stayed at Childrens Dallas for a week. Upping meds, changing meds and mixing meds.
Diagnosis: Epilepsy
Cause: Unknown
We have now found, through some absolutely amazing family and extended family, whom I will NEVER be able to thank enough, the wonderful doctors and nurses at Cook Childrens Hospital in Fort Worth, who are continuing to help us through this. We have had another grand last thursday, and are averaging anywhere from 5-30 seizures (jerks, drops, stares) a day. I was to begin back teaching at Apollo, but am having to put that on hold until the seizures are controlled. Jake is not able to go back to school until he is 30 days seizure free. We are still waiting for that ONE day. Please pray for our family and for little Jake. Although this is not the end of the world, it is a huge hurdle we WILL overcome. Pray for courage for Jake, understanding as parents, good doctors and for the right medicines.

Jake's mom, Christine


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Sunday, May 9, 2010

Mother's Day

I have read this poem before by Erma Bombeck, but it has been awhile.  Recently ,another mom of a special needs child just reposted it and I thought what a better time to share it with you.  On this wonderful Mother's Day.

Like the orginal poster, I too feel that Erma is wrong on one aspect of the selection.  Mom's of special needs children are not Saints, at least this mommy isn't.  Being a mom is what I signed up for and I am certain each and everyone of you out there would also rise to challenge, if indeed a special challenge was given to you.

You see, when we decided to have children, we chose to make them our priorities.  That is our job as parents.  To make our  kids, Addison, Jake and lil' bit, feel safe, to be there for them in times of need, and most importantly to push aside our own selfishness to care for the little ones that can't care for themselves.

This beast that we were given, has opened our eyes to empathy, Faith, priorities, and the things that should matter most.

Although, I wish we didn't have to see our little guy suffer, I wouldn't change the past 18 months for anything.

We are blessed. we have been through the trenches and the only way out is to look for the light and fight like hell back out of this hole.

To see our twerps fight their way through lifes challenges is what makes this mommy so very proud.

The Special Mom by Erma Bombeck, 1980



Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.


"Armstrong, Beth, son, patron saint, Matthew. Forrest, Marjorie, daughter, patron saint, Cecilia. Rudledge, Carrie, twins, patron saint, give her Gerard. He's used to profanity."


Finally, he passes a name to an angel and smiles, "Give her a handicapped child."


The angel is curious. "Why this one, God? She's so happy."


"Exactly," says God. "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."


"But has she patience?" asks the angel.


"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world, and that's not going to be easy."


"But, Lord, I don't think she even believes in you."


God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."


The angel gasps, "Selfishness? Is that a virtue?"


God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma'* for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."


"I will permit her to see clearly the things I see . . . ignorance, cruelty, prejudice . . . and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."


"And what about her patron saint?" asks the angel, pen poised midair. God smiles. "A mirror will suffice."

Thank you to our dear Mothers, Babi and Granny, on this special day, as they have given Matt and I the ability to see the rainbows after every storm.  Without them and their lessons, patience, and  understanding this roller coaster ride would cetainly be much more bumpy.

When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child. ~Sophia Loren, Women and Beauty

1 comment:

Julie said...

LOVE IT!!!!!!!